Caring for Someone With Mesothelioma
If you’re a mesothelioma caregiver, it’s normal to experience a range of feelings, from sadness and exhaustion to a sense of purpose and meaning in helping someone you love.
Mesothelioma caregivers are a key part of a patient’s cancer care team. They help their loved one make appointments, travel to and from hospitals, do daily chores like cleaning and grocery shopping, and so much more.
Caregivers have an important role, but it can quickly become physically and emotionally taxing. For this reason, it’s critical for caregivers to get help and support from family, friends and community members, support groups, and other organizations.
“It changes your life. Cancer changes everybody’s life.”
To provide the best care for your loved one, you must first take care of yourself. Download our Free Self-Care for Caregivers Guide today for practical tips and advice to help you prioritize your own well-being.
5 Tips for Mesothelioma Caregivers
If you’ve taken on the role of caregiver for your loved one with mesothelioma, there are some tips to know to help you manage your workload, stress levels, and competing priorities.
- Prepare for your new role. Gather as much information as you can to know what to expect moving forward. Mesothelioma Hope has a wealth of free resources we can share, and our Patient Advocates are always here to answer any questions you may have.
- Accept help. Caregiving is a team effort, and you can’t bear the weight of it alone. Whether it’s from other family members, friends, community members, or volunteers, it’s important for you to get support.
- Take care of your own needs. Mesothelioma caregiver burnout is very real, so you need to take care of yourself first and foremost. This includes allowing yourself to take breaks from your duties, prioritizing your physical and mental health, and asking for help.
- Find community. Mesothelioma caregiver support groups and peer mentor programs are available in person and online. Joining a support group can help you find community with other caregivers who can share advice and a listening ear.
- Know your rights. If you need to take time off work to care for a loved one, you are entitled to do so under the Family and Medical Leave Act (FMLA).
Caring for the Caregiver
The importance of self-care cannot be stressed enough for mesothelioma caregivers. By caring for yourself, you’ll be in better shape to help your loved one.
Regardless of the role you take on for your loved one with mesothelioma, it’s important to continue taking care of yourself.
Self-care may include:
- Eating healthy meals
- Getting plenty of sleep
- Prioritizing regular exercise
- Seeking a mental health professional if you notice signs of depression or anxiety
“If you don’t take proper care of yourself, you won’t have the energy or interest to help someone else.”
Addressing Mesothelioma Caregiver Burnout
It’s very common to feel “burned out” as a mesothelioma caregiver. According to a 2020 report by AARP, 64% of all caregivers described their caregiving situation as either highly or moderately stressful.
Some of the reasons caregiving can be so stressful are the competing demands with other things going on in your life, the lack of privacy and alone time, and potentially blurred lines between your role and that of the medical team.
According to Cleveland Clinic, signs of caregiver burnout may include:
- Changes in your sleep patterns
- Emotional and physical exhaustion
- Feelings of hopelessness
- Neglecting your own health
- Withdrawal from family and friends
If you find yourself struggling with these or any other signs of mesothelioma caregiver burnout, it’s important to focus on yourself. Download our Free Caregivers Guide to start your healing journey.
Mesothelioma Caregiver Resources
Navigating your mesothelioma caregiver responsibilities can be a big undertaking. Thankfully, there’s help available to make your life easier and less stressful.
Learn about mesothelioma caregiver support resources below.
Informational Resources on Mesothelioma
Knowing what you’re up against will give you confidence as you take on your new role of caregiver. Your loved one’s doctor can help provide information on their specific mesothelioma diagnosis.
A study published in the June 2022 edition of the European Journal of Cancer Care noted that caregivers’ lack of information about mesothelioma and uncertainty about a patient’s prognosis caused them stress.
“The first thing I recommend for newly diagnosed patients and loved ones is to get educated on all things mesothelioma — including understanding your pathology report, treatment options, symptom management, and more.”
Call (866) 608-8933 to speak with Nurse Jenna or one of our other Patient Advocates today.
Mesothelioma Caregiver Support Groups
Mesothelioma support groups connect you with other caregivers and provide a safe place to speak openly about your emotions and challenges.
Mesothelioma caregiver support groups are available:
- In-person
- Online
- Over the phone
Peer mentor programs also allow you to speak to someone one-on-one rather than in a group setting.
Respite Care
Respite care provides short-term, temporary relief for caregivers. During a set period of time, a medical professional can care for your loved one and make sure their needs are met.
This gives you a much-needed break to manage work, family, and household commitments — or simply relax and recharge.
Financial Support for Caregivers
One of the more common mesothelioma caregiver struggles is financial challenges. Many caregivers need to take time off work, pay for home modifications and respite care, or help their loved one with navigating insurance costs.
Caregivers should know about FMLA, which entitles U.S. citizens to unpaid, job-protected leave to provide care for a family member. Although FMLA doesn’t guarantee financial assistance, it can help ensure you have a job to return to when your caregiving duties lessen.
Because mesothelioma is caused by asbestos exposure, patients and caregivers have many routes to financial support, such as legal settlements with asbestos companies and payouts from asbestos trust funds.
Learn more about your financial options in our Free Mesothelioma Guide, shipped overnight to your front door.
Mesothelioma Caregiver Duties and Roles
Some of the duties of a mesothelioma caregiver include participating in a patient’s cancer care plan, interacting with doctors, solving problems, and managing day-to-day tasks.
Splitting up responsibilities with other family members is a great way for mesothelioma caregivers to get support and prevent burnout.
Spouses
Spouses often take on the role of primary caregiver, leading the mesothelioma patient’s care and recruiting others to help. In many cases, they also research mesothelioma treatment options.
Spouses of mesothelioma patients may need to:
- Ask family and friends when and how they may be able to help
- Hold regular family meetings and provide updates on their loved one’s health status, medical care, and any immediate needs
- Make a list or calendar to organize shared responsibilities
If other family members can’t provide help, spouses can turn to friends, church members, or neighbors.
“My wife is always going to be there for me, and I’m honored to always be there for her. Look what we’ve already gone through together. We can make it through anything as long as we’re holding hands.”
Adult Children
Adult children are often a big part of a cancer support team, particularly if the mesothelioma patient and their spouse are elderly or have additional health issues.
Children can provide support by:
- Driving their parent to appointments and taking detailed notes
- Helping with chores around the house
- Hiring a nurse or home health aide
- Visiting their parent regularly to keep them company
If a mesothelioma patient is not married or their spouse cannot provide care, grown children may need to become the primary caregiver.
“My father is not the type of person to cause problems or pursue confrontations with anyone, but I am the opposite. If I see a problem, I tackle it head-on. That’s why I started fighting on his behalf from the beginning of his diagnosis.”
Siblings
Close siblings can offer emotional support to those fighting mesothelioma. For example, siblings may be able to recount fond childhood memories that no one else would know. This can be a great comfort to cancer patients.
Siblings can also serve as caregivers if the patient’s spouse and children are unable to do so, or if they simply need a break. In this way, siblings can help alleviate pressure on the primary caregiver and contribute to a healthier environment for everyone involved.
Siblings can provide support by:
- Caring for the patient’s children or pets
- Driving their sibling to medical appointments
- Giving the primary caregiver a break
“When you have a loved one fighting for their life, I promise you that you will find yourself standing right beside them, fighting just as hard.”
Other Family and Friends
Although mesothelioma mainly affects those over the age of 70, younger mesothelioma patients may be able to rely on their parents for care. If the patient is married, parents can support the spouse’s caregiver duties. In other cases, a parent may serve as a primary caregiver.
Additionally, mesothelioma patients often have friends or other relatives who are willing to help provide support. For veterans with mesothelioma, this may include the men and women they served with in the past.
Sometimes, friends and extended family may not be sure how to help. They can start by staying in regular communication with a patient and their mesothelioma caregivers.
Get help caring for your own needs so you are best equipped to take care of your loved one — download our Free Self-Care for Caregivers Guide now.
Long-Distance Mesothelioma Caregiving
If you live in a different city, state, or country from your loved one when they are diagnosed, it can add an additional layer of emotion.
In some situations, you may be able to relocate to act as the primary caregiver for your loved one — but sometimes that just isn’t possible. Luckily, there are still ways to provide long-distance care.
Long-distance loved ones can support mesothelioma patients by:
- Calling, texting, or video chatting to keep their spirits high
- Identifying ways to help them pay for treatment, like travel grants, VA benefits, and private legal claims
- Researching new treatments being tested in clinical trials
- Sending care packages to their home after treatment
- Watching their pets while they’re in the hospital
Get Mesothelioma Caregiver Support
No matter how much you love the mesothelioma patient in your life, caregiving comes with challenges. Whether you’re a spouse, close relative, or friend, remember there are many ways to get support.
Mesothelioma Hope’s caring team of registered nurses and Patient Advocates can help you:
- Connect with local mesothelioma specialists
- Determine how your loved one will pay for treatment
- Find a mesothelioma support group or peer mentor
- Locate respite care so you can rest and recharge
- Prioritize your physical and emotional well-being
Call us any time at (866) 608-8933. You can also download our Free Self-Care for Caregivers Guide for actionable tips and advice to help you care for yourself and your loved one.
Mesothelioma Caregivers FAQs
How do you care for someone with mesothelioma?
People who care for mesothelioma patients often perform a variety of duties that vary depending on the patient’s needs.
Your loved one may need more involved care if they are in a later stage of mesothelioma.
Common mesothelioma caregiver duties include:
- Bathing and dressing the patient
- Cooking food and helping the patient eat
- Coordinating treatment plans
- Driving the patient to and from doctors’ appointments
- Giving medications
- Hiring a home health aide or nurse
- Locating the best cancer center or health care facility for your loved one
- Managing Medicare, Medicaid, and other health insurance
- Navigating end-of-life care, including hospice care
What should I expect when caring for a mesothelioma patient?
Your role as a caregiver will likely change over time.
At first, you may find yourself providing moral support until mesothelioma treatment starts. After treatment, you might need to help your loved one through the recovery process and manage any lingering symptoms and side effects.
You can also expect to feel both rewarded and challenged. Caring for someone with mesothelioma can be difficult at times, but it can also strengthen your bond with your loved one.
What are some common mesothelioma caregiver struggles?
Loved ones of mesothelioma patients may take on a significant caregiving burden, both logistically and emotionally.
There are many struggles that caregivers may face, including:
- Supporting their families in addition to their loved one with mesothelioma
- Feeling a sense of depression, anxiety, fear, or overwhelm
- Juggling existing responsibilities with their new caregiving duties
- Navigating insurance, medical jargon, and other confusing elements of a cancer diagnosis
Contact us any time for help if you are dealing with any of these struggles. Our team is standing by to provide support resources, guidance, and a listening ear.
Is there such a thing as mesothelioma caregiver burnout?
Yes, people show signs of stress in different ways, and caregivers are no different.
Some common signs of caregiver stress and burnout include:
- Chronic exhaustion
- Difficulty sleeping
- Disconnecting from others
- Frequent or recurring illnesses
- Irritability and forgetfulness
- Loss of interest in hobbies
It’s important to note these signs early on and take action by taking a break or getting professional help. Stress and burnout can take a toll on your health and the quality of care you’re able to provide.
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